Patients creating self-help on the internet -lessons for future design of internet based healthcare resources

This paper reports from an ongoing research work on patients’ use of the Internet for medical information with special focus on how this can inform the design of future IT use in the healthcare - patient relationship. The paper explores the process of initiating patient communities online as a way of coping and making sense of a difficult life situation when facing illness. The purpose of the paper is to analyze this process in order to increase our understanding of what triggers some individuals to put the technology to use in order to create online communities for patients. A better understanding of these processes is believed to be important both to increase our knowledge of the activities as an online phenomenon but also to inform the design of future information technology use. A descriptive qualitative design of the study was used and ten face-to-face, semi-structured interviews were conducted with purposefully selected patients who share the experience of initiating and managing online communities. In addition, online observations of 15 communities were performed mainly focusing their general structure and design. On a general level it is concluded that the initiation of patients’ online community building is grounded in personal coping processes involving a complex mix of different coping strategies rather than as direct and purposeful action in order to fulfill group specific purposes. In addition it is suggested that the experiences and the knowledge developed by the patients during this process can be a valuable resource both in the design and in the maintenance of information technology support used in the healthcare - patient relationship.